Abstract
Background: The UK-based Brain Tumour Research organisation in their 2016 report highlighted ‘average in-patient, post-diagnosis costs for brain tumours are £13,200, higher than breast, lung and prostate cancers.’ They also highlighted consistent with other literature that the economic burden includes a substantial element of indirect supports including productivity losses, informal care and out-of-pocket expenses: ‘average UK household affected by a brain tumour will be financially worse off by £14,783 per year versus £6,840 for all cancers.’ There is also a growing evidence-base for benefits of self-management programmes (SMPs) for patients including alleviating the burden of the disease on patients and their informal carers. Strategies can improve the quality of healthcare and patient literacy, enable more access routes to support, reduce health-related inequality, improve stress levels, promote confidence, and boost health-related quality of life (HRQoL). However, SMPs to assist cancer survivors have a limited evidence base with uncertainty around the clinical, HRQoL and cost-effectiveness impacts.
Objective: The Ways Ahead Study seeks to employ a co-design approach to develop a prototype SMP to meet the needs of people living with a low-grade glioma (pwLGG) and examine if SMPs can improve outcomes and reduce healthcare resource utilisation for this group.
Methods: Multiple methods were utilised for evidence synthesis including secondary data identification and a qualitative strategy conducted with pwLGG, informal carers, and healthcare professionals. Co-design workshops provided preferred attributes of SMPs from the user perspective. A prototype was devised to address the unmet need reported in the earlier phases of this study. The pooled evidence afforded generation of an economic assessment framework employing a cost-consequence analysis. The proposed intervention was delivered over a 10-year time horizon incorporating e-Health bespoke applications for pwLGG delivered by healthcare advisors and supported by social prescribers. Costs included in the economic evaluation included training, technical app development and running costs, staffing costs for delivery in the initial period and for the duration of the average life expectancy. These estimates were reported in UK (£) for 2022.
Results: Attributes of SMPs included online features addressing both clinical and non-clinical needs. In-person and web applications were preferred by pwLGG requiring interaction with healthcare professionals' post-diagnosis. Clinical symptoms vary with uncertainty around survival having a huge psychological burden. Productivity losses also account for a large burden. The average annual cost of this intervention was estimated at £812 when delivered over a 10-year period. The range of benefits when quantified can signal a return on investment could outweigh this cost.
Conclusion: SMPs has the potential to improve disease management, HRQoL and reduce psycho-social impact of the disease burden on pwLGG and carers. Depending on the extent of the improvements and the configuration of the SMPs, there is potential for cost-shifting resulting in a reduction of the overall cost of delivering care and indirect burden including productivity losses. Given the average annual cost of this intervention is £812 and a published annual burden on carers is £5581, there is potential for this programme to alleviate the impact on carers, thus reducing this cost.